Angels in our midst...

It's easy to see blessings when you set your mind to the positive, and so I've been taking time to identify and acknowledge these in a daily gratitude journal. Sometimes the entries are simple things like an unexpected note, a phone call or visit from a friend or family member, and sometimes they are entries about the people I would have never met if not for my illness.

Strangers who demonstrated: kindness, compassion, hope and encouragement, just when I needed it most. Although, I may only name a few here, know that there have been many in the past year and as each day passes more of them appear along the way.

Dearest Pauline, you are filled with light and healing energy and through you I have gained peace, and the capacity to be gentle with myself. Thank you for your guidance and healing.

Holly, thank you for permission to allow myself to grieve and fall to pieces, when everyone around me always expects me to be strong, including the worst offender, me... Thank you for the encouragement to journal and embrace the journey.

Robert, I feel so fortunate that you did not see my disease as an obstacle to healing my shoulder. The pain began in January and by September when you came to help me, it was frozen and immobile. I thought I would never regain the strength or range of motion to use my arm again.You gave me hope, encouragement and the will to fight through the pain.

It's sad to say but when you have ALS, most of the medical professionals you encounter are focused on educating you on the progression of the disease, and helping you prepare for what's to come as you digress. It's rare to find someone who encourages you to fight! Thank you Robert for your positive spirit and faith in me.

Laurie, from the day we met, I felt as if I'd known you for years. Thank you for your visits, and listening as I babble endlessly... Your practical insights help me stay on track.

And....Joe, the neighbor just down the street, who may have never come by to meet us if he did not recognize that we shared the same challenging disease. Thank you for checking on me this week and bringing me hope in the form of new research information you gathered at a recent ALS seminar I could not attend.

To all of the Angels in our midst, it's likely that our paths would not have crossed if not for my situation, but my life has been impacted by your presence, my faith made stronger, and my heart has been touched, and for that I am truly grateful...

The Domino Effect...

There is no cure for ALS yet, but there are medications your doctor can prescribe for the symptoms, for me it's been anti-inflammatory drugs to reduce pain, and muscle relaxers to try to relieve some of the spasticity.  Most of these medications come with their own set of adverse side effects. No worries though, they can also prescribe medication for the side effects...And so begins the domino affect, but where does it end?


Before you know it your head is spinning and it takes an hour once a week just to fill those tiny compartments in your day of the week pill organizer!  Oh yes, you'll need one of those; try to avoid the ones that look like a mid-size tackle box. They have the am, mid-day, evening, and bedtime compartments for each day; helpful to those who need to take different medications multiple times a day. 


However, I would suggest you exercise caution. If you would consider yourself to be someone akin to Felix Unger, it's tempting to get the tackle box and be that organized, but wait until you need to get those tiny pills out of the mid-day Wednesday slot!  Not so easy with the loss of fine motor skills in your fingers.

I recommend the single compartment, day of the week organizer with the locking lids. Get more than one if you need an am, pm etc. You can just open the lid for Wednesday, and pour those little buggers into your hand or a dixie cup. 


If you're more of an Oscar Madison type, with any luck you're married to a Felix type and it's already been taken care of for you... and it's color coded, not that you care... but try to make it seem like you do.


All that said...you really need to decide for yourself how you want to handle all the prescriptions they hand you before it gets out of control. It's sort of like doing a cost benefit analysis, only you have to weigh the benefit against the discomfort, and you have choices.


In my experience, some muscle relaxers can cause some of the necessary muscles to lose control, not so good if it affects the plumbing. Now, they can fix that with another medication, but this one could cause a backup on the other end, so you'll want to give it some serious consideration.


Or you can take the one that causes acid reflux but Pepcid Complete should take care of that, and if not, we can get you a prescription for Nexium, the little purple pill, you've likely seen the commercial for that one.


There is another option, but it can cause your legs to feel rubbery and unstable, so start with a smaller dosage and increase gradually. So you give it a try and okay, things are going well, no rubber legs but... well, if you admit that you're feeling a little sad and you find yourself crying over the silly things like, feeling pressured to decide what to have for dinner, that statement will earn you a prescription for an antidepressant faster than you can say Zoloft! 

No thanks, my pill organizer is full.
There's no room for Zoloft.
You've got to draw the line somewhere...

Holding out Hope...

It was late December 2010, Christmas was only five days away, and we found ourselves sitting in a tiny room at the Mayo Clinic in Rochester, Minnesota under 38 inches of reported snowfall, getting a second opinion...holding out hope that the young neurologist we saw at home, was wrong about the diagnosis.

I prayed over and over on the long drive out, that God would intervene and we would get better news. Upon arrival at the exit for Rochester, I saw a rainbow in the sky and wanted to believe it was a sign of hope.

After all, the doctor couldn't be more than twelve; he must have missed something...   I was served a death sentence, and I wasn't going to accept it from someone who had the ringtone on his iPhone configured to quack like a duck. Funny, yes... and being the geek that I am, I could appreciate the humor, but also being a child of the sixties,   I needed someone like Marcus Welby M.D. to check things out.

This was the face of a man I could trust!

The Mayo Clinic is an amazing place, within minutes of our initial meeting we had a four day schedule of appointments with specialist and tests to be performed. This included: the collecting all of the compulsory body fluids for testing, a pulmonary test, another spinal tap and another EMG! 

Bravo to the delightful woman who performed the spinal tap without consequence. She stood less than five feet tall and likely weighed in at less than 100 lbs. She spent a few minutes introducing herself, and explaining what she was going to do as I would lay on my side, facing the wall. No need to remove my clothing or even my shoes, she simply said it works best when we just chat during the procedure. So we talked about our kids, as moms often do, and in a small exam room, without a fancy gravity table, x-ray machine or team of medical professionals, she got the job done! Never under estimate the gentle finesse of a woman.

The EMG however, was equally as painful as the first one, but necessary I suppose, and the pulmonary tests were interesting. I had a cast from a broken wrist that reached up my arm nearly to my shoulder making it difficult to use the arm for anything, so they had to call in a lip holder to assist in the testing. This was a tad awkward for both the designated lip holder and me; it's best you don't try to visualize it.

Organized, efficient and thorough, the Mayo team reached a conclusion in three days that had taken our doctors at home the better part of the last nine months to determine. Unfortunately, our Doogie Howser was right, and after we met with the specialist who delivered the confirmation, we sat with a nurse who was charged with the task of educating us on what to be prepared for as the disease progressed, clearly not the fun part of her day.

I remember taking some notes with my pad and pen, hardly legible as my tears were hitting the page, making the ink run. I'm sure I still have those notes, and the folder filled with resource information that would lay untouched for months after we returned home. It was only a couple of weeks since the first diagnosis and the confirmation stung, throwing us both back into a state of shock.

We had the answers we had come for but it was a long, quiet drive home...

Back to the Drawing Board...

Okay, so it's not Lyme's disease, but I learned a new skill, I could inject antibiotics into a central line... and who knows when that may come in handy?

We met with the neurologist again, and he explained that he had some ideas about what was going on, but he would need to perform one more test to confirm his suspicions. He could perform the test himself, in his office.

So on December 9, 2010 we returned to his office for an EMG, short for Electromyogram. After careful consideration, I can report without hesitation, that an EMG is even more painful than a Spinal Tap, save the week long aftermath. This uncomfortable procedure involves placing electrodes in several strategic locations on your body: arms, legs, feet, and spine, while the doctor performs tests to evaluate the health of your nerves and muscles.

He begins with something called a Nerve Conduction Study, in which he measures nerve function by stimulating them with small electric shocks, not too bad, similar to the Evoked Potentials testing, only more extensive, but it doesn't end there...

In part two, he inserts a needle equipped with a microscopic electrode into your muscles, and as if that's not painful enough, he moves it around while you flex the muscle being tested. Did I say "OUCH"? When he stuck the needle in my back, my body jumped so high it left the table! For Pete's Sake...what did I do to deserve this kind of torture? Okay, I did accidentally kill my brother's gerbil when I was eleven, but he bit me; and it was not intentional; it was self defense!

When it was over and the doctor left the room, I could see by the look on my husband's face that it was just as painful to watch, as it was to actually be the pin cushion. I dressed and we waited for the doctor to return with his diagnosis.

It was surreal, like a scene from one of those medical TV shows you've watched. I could see his lips moving but the words hung in the air as if I could just refuse to accept them into my reality. ALS meant nothing to me...Lou Gehrig's disease? He was a baseball player, he died, but that was a long time ago... Two to five years... Seriously? I looked over at my husband and saw his eyes filled with tears but I held out, surely this can't be right...

Germbusters...

We were referred to Germbusters, a catchy name for the practice, and the doctor was known to be a Lyme's Disease Specialist, born, raised and educated on the east coast where the disease was first discovered.

He was a pleasant fellow, happy to meet another transplant, and we bonded as we shared commonalities reaching as far back as our grandparents coming from nearby towns in Italy. He took my history including where I was born, lived, and traveled over my 40 plus years. While the tests were not 100% conclusive, he was fairly certain that my east coast upbringing, and ongoing trips back to the homeland, qualified me for the likelihood that one of those nasty little ticks had at some point gotten to me.

Fortunately, Lyme's Disease was treatable if caught early, but there was no telling how long ago the alleged  interlude might have occurred, and left untreated the bacteria had the potential to cause all kinds of neurological problems.

He was confident in his ability to kill the little spirochetes, and described his aggressive treatment plan that included inserting a central line through a vein in your arm straight into your heart, to pump the antibiotic into your bloodstream daily for six weeks. There was no time to waste, and while he did not promise that I would return to normal after the treatment, he could prevent further damage by annihilating them.

So, okay...I have Lyme's Disease, that's not too bad, and back to the hospital we go to have a central line installed. Interesting procedure, not for the squeamish, but it was over quickly, and it wasn't too painful. Next, were off to the clinic to learn how to administer the drug myself once a day. The nurse in the infusion clinic patiently showed me the six steps to be followed precisely to ensure I would not develop an infection. I would return to see her weekly and she would give me the week's allotment of medication, check the port and take blood for testing.

This wasn't too bad, I had to repeat the process the same time each day, so I did it at lunch time. This did occasionally throw people who walked into my office during the 30 minute event, if they weren't aware of my new ritual. But they got used to it as quickly as they did when for a span of time, I sat on a large lime green balance ball instead of my office chair. Just for fun I'd bounce up and down while working at my desk, and catch the confused look on the face of a passerby that did a double take to see what in the world I was up to...sometimes you have to make your own fun at work!

When we had completed four weeks of treatment, I saw the doctor to evaluate the progress. "How are you feeling?" he asked. "Good, maybe a little tired but nothing dramatic while taking the drug so far." I replied. He looked down, with a sort of melancholy look on his face that puzzled me. The insurance company only pays for four of his aggressive six week plan, so given the considerable out of pocket expense I asked if he thought I would benefit from the additional two weeks of treatment.

Apparently, not feeling worse indicated that nothing was happening, and if the drug was actually killing those little spirochetes, I would have been feeling awful as they fought back. He concluded that he did not think I would benefit from the additional medication, and there was nothing more he could do for me. He actually looked defeated as he referred me back to the neurologist.

So, back to the hospital to remove the central line...
I guess it wasn't Lyme's Disease after all...